The 13th European Conference on Rare Diseases & Orphan Products (ECRD 2026) will take place 3–4 June 2026, in person in Prague and online. Organised by EURORDIS-Rare Diseases Europe, co-organised by Orphanet, and supported by AFM-Téléthon, ECRD is Europe’s largest, patient-led, policy-shaping event for the rare disease community. The 2026 edition, titled Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases, will mark the launch of a multi-stakeholder process to develop a European Action Plan for Rare Diseases.
Poster abstract submissions for [...]
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The European Rare Disease Research Alliance (ERDERA) has pre-announced its upcoming 2026 Joint Transnational Call (JTC):
Launching on 10 December 2025, this initiative will fund multinational research collaborations aimed at improving diagnostic clarity for patients whose rare diseases remain unsolved. An information webinar for potential applicants will take place on 16 December 2025, 15:00–17:00 CET.
The call will welcome proposals under the theme:
Resolving unsolved cases in rare genetic and non-genetic diseases through variant validation and new technological approaches
Access the pre‑announcement
An informational [...]
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Register now for the European Society of Endocrinology (ESE) Hypoparathyroidism Patient Forum 2025 taking place on Saturday, 15 November from 10:00-13:00 CET.
Programme highlights:
🔹 Social Impact of Hypoparathyroidism – chaired by Prof. Andrea Giustina & Prof. Alberto Pereira
• François Houÿez, EURORDIS – amplifying the rare disease patient voice in Health Technology Assessment
• Prof. Heide Siggelkow – new insights on quality of life and social impact
• Natalie Grosset – the patient journey
🔹 Revised ESE Guidelines [...]
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The European Commission has opened a consultation on the draft Multiannual Financial Framework (MFF) — the EU’s long-term budget plan.
In the current proposal, rare diseases are not explicitly mentioned, and the EU4Health programme no longer appears as a standalone initiative.
European Reference Networks (ERNs) — established by the European Commission in 2017 — have become a cornerstone of the EU’s strategy to improve diagnosis, treatment, and care for people living with rare and complex conditions by connecting healthcare providers and specialists across Member States. The omission of ERNs and rare [...]
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Register now for a webinar from MTG6 planned for Tuesday, 24 March 16:00-18:00 CET.
Webinar Chair: Prof. Nienke R. Biermasz Endo-ERN MTG6 Adult Chair
Agenda / Presentations:
Key Challenges in Neurosurgical Management of Cushing’s Disease
Prof. Leszek Sagan, Department of Neurosurgery and Pediatric Neurosurgery, Pomeranian Medical University in Szczecin, Poland
Beyond the Cure: Quality of Life in Patients with Cushing’s Disease in Remission
Dr. Karol Piotr Sagan, Department of Endocrinology, Metabolic and Internal Diseases, Pomeranian Medical University in Szczecin, Poland
Quality of Life After Pituitary Surgery in Cushing’s Disease – A Patient’s View
Ms. Marta Barańska, MBA in Health Care, [...]
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The European Rare Diseases Research Alliance (ERDERA) will host the 2nd International Conference on Clinical Research Networks (CRNs) for Rare Diseases, co-organised with Rare Disease International (RDI) and the International Rare Diseases Research Consortium (IRDiRC).
The conference will bring together global leaders from research, policy, and patient communities to explore progress in real-world evidence, diagnostics, and international clinical research collaboration. Sessions will also address inclusivity in data from low- and middle-income countries and multi-stakeholder engagement in rare disease trials.
This is a hybrid event with attendance possible online.
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The European Commission has published its latest Cross-Border Healthcare Trend Report (2025), revealing steady growth in the number of EU citizens accessing medical care outside their home country. Between 2021 and 2023, more than 1.3 million requests for healthcare abroad were submitted under the EU Directive on patients’ rights in cross-border healthcare, with the vast majority approved.
The report shows that Spain, Germany, France, and Czechia remain leading destinations for patients seeking timely or specialist treatments across borders. Overall, €465 million was spent on cross-border healthcare during this period — demonstrating how European [...]
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On 9 October 2025, Endo-ERN ePAG Lexi Breen presented a poster titled “Understanding Barriers Faced by Gender Diverse People in Accessing Higher Education” at the British Association of Gender Identity Specialists (BAGIS) Symposium in Manchester, UK.
The poster explored the evolving landscape of support for gender diverse, including intersex, students and staff in higher education. It highlighted systemic barriers and called on institutions to strengthen inclusive practices and policies The BAGIS conference gathered clinicians, researchers, and advocates committed to advancing gender diversity in healthcare and education.
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The European Rare Diseases Research Alliance (ERDERA) has a call for the Networking Support Scheme (NSS). The deadline for this round of funding is open until 7 April 2026. The aim of the NSS is to bring rare disease and the rare cancer community together across borders, disciplines and sectors.
This call will be open until April 2029 with applications being reviewed on a six-monthly basis.
To be eligible, applicants must plan a networking event with a clear rare disease or rare cancer research focus and address both aims of the call: promoting knowledge exchange and supporting [...]
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🤝 Endo-ERN & ERN eUROGEN Collaborative Event
Improving Rare Disease Care in Ukraine: Access to European Reference Networks (ERNs) and Expert Resources
🗓 Wednesday 18 February, 16:00–17:45 CET / 17:00–18:45 EET
📍 Online (Zoom, English with Ukrainian live captions)
This joint webinar will explore how Ukrainian clinicians and patient representatives can collaborate with European Reference Networks (ERNs) to strengthen rare disease care. The programme will introduce the ERN system, feature insights from Endo-ERN and ERN eUROGEN, and outline how to engage through the Clinical Patient Management System (CPMS).
Speakers include [...]
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